Any one been diagnosed with Primary Hyperparathyroidism

I have hyperparathyroidism but Calcium is normal, as are all other markers. My endocrinologist is monitoring my levels. They have been high since 2020 that we know of, but nothing has gotten any worse. It may never get worse he said. Good luck to you. When they identify a bad gland and remove it, people are better, from what I have read.

Yes I had surgery for hyperparathyroidism in the summer of 2021. I am very happy that I had it done. It can wreak a lot of havoc on your body if it goes undiagnosed for a long time. I went undiagnosed for years even tho I saw my internist every year and I saw a nephrologist every year for kidney stones (kidney stones, fatigue, and osteoporosis (all of which I had) are hallmarks for Hyperparathyroidism). My calcium blood level was fairly high(10.2) but not super high. Finally a new nephrologist I went to said I should see an endocrinologist. The endocrinologist diagnosed me as hyperparathyroid and I was scheduled for surgery within 2 months, with a surgeon in our town who is a specialist in parathyroid and thyroid surgery. It is very important to have a surgeon who has done many parathyroid surgeries as a general surgeon may not know the best techniques. He said he thought I had the problem for over 10 years and everyone missed it, even with my stones, osteoporosis and blood tests. The surgery was not terrible at all! It’s outpatient and you have a small incision on your neck ( I can hardly see mine now), you rest at home for 2 to 3 days and you are back to normal. I have not had a kidney stone since, I am on Zometa for osteoporosis and my fatigue went away. I felt my brain was fuzzy for a few years before the surgery, that got better too. There is no pill you can take for hyperparathyroids, you need surgery to reverse the problem. If it goes undetected for a long time it can affect your heart and other organs. There is also there is a link to breast cancer which unfortunately I had in 2022. Who knows if I had been diagnosed as hyperparathyroid in a timely manner if the breast cancer would have happened. I also broke a wrist, and had 2 spinal compression fractures. The bottom line is overactive parathyroids are nothing to fool around with. If your doctor says he is watching them, after what happened to me, I would insist on seeing a reputable endocrinologist to give me an opinion. Good luck to you and to the person who is being watched by her doctor. My doctor was watching but missed it. I just don’t want others to go through what I did. Sending wellness wishes to all on this board.

@kitty2 I had a tumor on one of my parathyroid glands back in 2007. I was so sick before the surgery because my calcium level had gone up.
I had the surgery in 2008, and immediately felt so much better! Literally, the next day it was as if a cloud was lifted off my head.
The parathyroid glands are extremely important because they regulate the calcium in your system and it affects your brain. When one gets a tumor, it has to come out for the sake of your brain chemistry.

The surgery is very simple, and nothing to fear.

Thank you so much for your reply. I sure appreciate your feedback. The surgery is delayed now because I got Covid again. Thank you so much. Kitty2

Did you have the surgery? Or are they just watching your levels? I have had lab work, a 24 hour urine test, cat scan and the next on the list is a Sestamibi scan which is Friday which was delayed because I got Covid again so everything has been delayed. Thank you..Kitty2

No surgery. Not needed yet. My bones, urine and calcium still all normal. But don't know how long parathyroid hormone has been elevated. There is a type called normocalcium type and i have that. No CT scan or sestambi yet. What is your level of parathyroid hormone? Mine has been as high as 175 but lower now but never normal anymore

@tschon but how do you feel?
Testing is one thing but it’s your body and you know what you are experiencing.
This parathyroid disease is nothing to be messed with I promise you.

@kitty2 oh no!
So sorry to hear that. Take care and rest.

I am fine in every way so far. Sorry if you are having a hard time. I have no other medical issues

Hi..is that the PTH ..I was just looking at a letter from the endocrinologist..when I had the 1st ct scan , a 3cm adenoma was seen on the scan..the Sestambi scan is scheduled for this friday. The surgeon that I saw two weeks ago said I needed the surgery. It was scheduled , but I got Covid again so that is not going to happen, my chest is full of junk and they would not clear me to have surgery. How do you feel? Did they find this by having a dex scan and then the lab work? Thanks kitty2